Posts Tagged ‘Cyclosporin’

Despite only having to wait a few days to start this new line of treatment, today could not have come fast enough for me! I’ve had a horrible few days pain-wise, which has even made me wonder if the Tocilizumab was doing more harm than good, but I guess that doesn’t matter now.

We set off from home at about 9.30am and arrived on the ward at 11am. I was shown to my room and my nurse came to cannulate me and take the usual blood tests and observations; I also had to be weighed, since the dosage of the Infliximab would be worked out from this. The normal dose is 3mg-5mg per kilogram body weight and I received 600mg, weighing 60kg so quite a hefty dose of 10mg per kilogram! I was also asked a number of routine questions about infections etc, since it was my first infusion, but there were no problems and, once my blood test results came back, I would be hooked up as planned.

After some lunch, my Rheumy came to see me to see how things were. Obviously not much had changed since Friday, but he did explain that it would take a couple of infusions at least before we notice any improvement and reassured me he’d be able to help me out short term for our weekend in Dublin at Easter if things weren’t better by then. I am to keep up with the Cyclosporin alongside the Infliximab, rather than the usual Methotrexate. When I was in hospital, they checked the levels of this is in my blood and it was lower than expected, so it looks like the Gastritis had affected the absorption of my oral medication. I also had a chat to one of the nurses looking after me, whose 17 year old son has Rheumatoid Arthritis. He currently sees my previous Paediatric Rheumatologist, Eileen Baildam, but will have to change to an adult consultant soon. She said that seeing Dr Snowden’s care of me has convinced her that he is the doctor for her son too, so that was nice!

It took a couple of hours for all of my blood test results to come back, but at around 2pm my nurse returned to give me a couple of meds that I needed before the Infliximab; there is a higher chance of allergic reaction with this drug than other biologics, something I was a little bit concerned about because I have serious allergies to a lot of antibiotics. As always, prevention is better than cure, and so they give you a couple of things to try and reduce the chance/symptoms of a reaction. Firstly, I was given a shot of IV anti-histamine and then a substantial dose of IV hydrocortisone; once they had been flushed through it was time to start the Infliximab / Remicade infusion.

The Infliximab came in a single bag, set to go through the line over two hours. The nurse sat with me for the first half hour to make sure I was okay; I did feel quite drowsy but then we realised that Anti-histamines can have that effect too, plus I could just have been tired after not sleeping much the past few nights. I had my observations – Blood Pressure, Pulse Rate, Breathing, Temperature – taken every half an hour throughout the infusion and during the time that I stayed afterwards. My heart rate dropped a little bit (to within a normal range considering that it’s usually high), but everything else was fine. The infusion finished after just over two hours and then there was an extra half an hour for the saline bag to flush it through afterwards. We then stayed for about two hours so that they could keep an eye on me and make sure I didn’t develop a reaction, although this is more likely to happen early on or during your second infusion. Better to be safe than sorry though.

Apart from still feeling very sleepy, I was fine, but they told me to ring the ward straight away if I had any concerns. We left the hospital at about 7pm and had a 90(ish) minute drive home, so it was a looong day for both of us (nearly 12 hours!). As a well-earned treat we stopped off at Domino’s Pizza on the way and ordered 3 courses – A Chicken & Wedges share box, a Medium Stuffed Crust Pizza each and Cookies to share – not something we do very often but it was just what we needed and really hit the spot, plus there’s enough left over for lunch tomorrow!

I feel like I’ve lost a whole day, going from bed – car – hospital – car – bed, but hopefully it will not be a day wasted. My next infusion is in a fortnight’s time and then six weeks after that; eventually they will be once every eight weeks, which will be less hassle than once a month at least. I know I keep saying it but I really, really hope that this is the one to turn things around. I feel so ready to get back on my feet, to get stronger and build myself up even more than before and then to put my mental energy to the blog and other projects I have in mind.

I guess only time will tell though,


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Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,


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I wish that for once I could just feel better.

It’s a week since I had the cortisone injections and a few joints have improved; I was pleased to be walking better than I was previously, although I still don’t know how much better I’ll be at walking distances as I haven’t been anywhere! I also began to wake a bit earlier each morning, which I took as another good sign, and I’m no longer feeling low.

At the same time though, I am having more temperatures and rashes on a daily basis, I’ve been feeling queasy and last night I was finally sick. I don’t know if this is Still’s related, mediation related or just a bug that I’ve picked up. I don’t remember if I had any side effects the last time I stopped Methotrexate as it was over ten years ago and I was very ill in hospital at the time. It seems unlikely I’d feel the effects only two days after being due a dose though. I also can’t remember having any side effects from the Ciclosporin in the past, so I’ll just have to see how I go.

Joints-wise, the hip pain is still prominent and I keep getting twinges in my neck again, so I’m back to the exercises and minimising time spent at my computer, reading, etc… anything to prevent me needing to go on the Diazepam again. I’ll give the hip until Tuesday and let my rheumy know how things stand (or sit as the case may be).

So I’m a bit all over the place – neither here nor there.

Here’s another rash photo for those interested – it tends to be red and patchy on my face, neck and chest and gets more ‘speckled’ on my abdomen and arms, particularly on the back of my hands.

Rash starts to spread during a high temp.

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Firstly, it felt so good to start the Ciclosporin this morning and know that I wouldn’t have to take the Methotrexate again; the brand I have is called Neoral and although the capsules smell of hops (ie. yucky) I tolerate them sooo much better than the MTX and usually they have the added benefit of actually treating my symptoms too, whereas MTX was used to stop me from forming anti-bodies to the meds rather than therapeutically.

I was surprised to get an email from my Rheumy in the afternoon with the results of my xrays. The xrays were, in his words, ‘essentially normal’, meaning that there was no major damage evident, which is great news neck-wise. I had a feeling that the neck problem was muscular, since it has improved so much since my GP treated the spasms with Valium and neck exercises. He wants to see if my right hip settles down with the changes in my meds and the steroid injection to the right knee; if it doesn’t do so within the next couple of weeks, then the pain is possibly not due to inflammation and will need investigating further via MRI Scans.  Avascular Necrosis, which is my main worry, doesn’t show up on xrays in the initial stages so an MRI would give us a better idea of what was going on. Hopefully, I’ll see some improvement rather than it get to that stage though.

I was surprised that he had started me on quite a high dose of Ciclosporin (300mg) rather than gradually increasing the dose and I got the chance to check that out with him. He reassured me that it would be better to get to the therapeutic level as quickly as possible, plus I have always tolerated it in the past – well, until it started to effect my Kidney function, but there has been a big break since I last took it so that may help.

I have a good feeling about this combination, could this be the one to turn things around again?

I hope so!


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So, December flew by and it was infusion time again. I woke up earlier than normal to get to the hospital on time and wasn’t feeling great at all. It took a lot of help and determination to get myself into the car as I was stiff, in pain and as weak as a kitten.

We arrived on the ward and the nurses noticed I was struggling straight away; I don’t even remember them fitting the cannula or taking my blood, but while taking my observations the Sister asked me how long I’d been feeling this way. I told her everything, she asked if I was feeling breathless and I explained that it wasn’t breathlessness exactly but a sense that I might forget to breathe if I didn’t make a conscious effort. I’m sure others have felt this too at times. She was obviously concerned and called my Rheumy straight away.

It wasn’t long after, that he came to see me; he asked if I felt awful in the usual way and I explained mainly as a Still’s flare but that I’d also experienced muscle weakness comparable to when my diagnosis was Dermatomysositis at 14. He examined my joints and said that he could feel the heat from them through my clothes, particularly my elbow and knee, which he injected with cortisone. Since there was no reason not to take Ciclosporin with the Tocilizumab and I’d responded well to it in the past, he decided to take me off Methotrexate and put me back on Ciclosporin at 300mg a day.

He also said he had spoken to a Paediatric Still’s specialist called Dr Helen Foster, who has lots of experience with Tocilizumab and had told him that it is not unusual for there to be an interval between test results and symptoms improving.  So I am still hopeful that this could be the winning combination and if I ever feel as good as my inflammation markers currently are (ESR of 8 and CRP less than 1 – both results the best we have ever seen for me) then I could end up feeling pretty fantastic in the near future. We just have to keep an eye on some of my other blood test results, as my WBC is low at 3.5 and neutrophils at 1.5. I don’t want a repeat of last year when Imuran caused Neutropenia and left me in an isolation room in hospital. Hopefully, this time round it has been the Methotrexate and not the Tocilizumab.

The last thing that we discussed was my recent neck pain and current hip trouble, which is agony. He had barely moved my right hip before I started yelping out in pain. It could be inflammation, or joint damage from the Still’s but he also mentioned something called Avascular Necrosis, which is when the bone tissue dies and can be caused by prolonged use of steroids. It has been fifteen years on Prednisolone without a break for me, plus the joint injections and occassional IV, so he sent me off for xrays of the hips and neck.

I was wheeled down to the xray department, where I struggled getting changed into a gown, getting up from lying on my back after the hip xrays and standing up for the neck ones. It made me realise just how much I have been relying on other people and on minimising what I do. Once we were back on the ward, I had a nap while we waited for the Tocilizumab. The infusion arrived just before 5.00pm and takes an hour to go through, it makes me feel warm but apart from that I have no reaction to the infusion itself. We left the hospital just after 6pm with my next appointment booked for the 2nd February, and knowing that my Rheumy would get in touch in between with my xray results.

So now I’m pooped and have that slightly overwhelmed feeling I get when having to take so much information in from hospital visits. I’ve probably said it before, but it makes things feel so much more real on days like today.

I’ll be good after a sleep,


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At my last Orencia infusion on the 15th September, Dr S and I came to the conclusion that it wasn’t helping the majority of my symptoms, plus my bloodwork was either getting worse or staying the same. The decision was made to switch to Tocilizumab (RoActemra) and I had my first infusion today.

It’s been an extremely long and tiring day. I arrived on the ward only to find it extremely busy with the chemo clinic, so there wasn’t a room available for me. Instead I had to sit in the waiting area, having the nurses take my observations (BP, Temp, Pulse rate etc) from there; thankfully, we managed to hijack a room to fit my cannula, take my bloodwork and then, later, to talk with the doctor but it seemed an even longer wait out there.

My consultant was away this week so I saw one of his registrars, since it was the first time I had received the drug. He went through things really well and I had a good chat to him about further treatment options; it’s always interesting to hear a different point of view. Firstly, he explained why Tocilizumab was a good treatment choice for me (Commence Science Lesson 1 as understood by yours truly):

When we have flu one of the things that makes us feel so unwell is an excess of a cytokine called IL-6. This cytokine plays a role in the production of CRP, which is also an inflammation marker in conditions such as Rheumatoid Arthritis and Still’s Disease. Tocilizumab is an Il-6 Inhibitor, which in layman’s terms means it ‘mops up’ any excess Il-6, preventing CRP production. Because my CRP levels are consistently high when the Still’s Disease is active, it suggests that I am producing too much Il-6, and so there should be plenty for the Tocilizumab to ‘mop up’, in theory making me feel better.

This sounds very promising but, of course, there is no guarantee.  He went on to say that if it didn’t work he felt it was good idea to return to the anti-tnf drugs because I had a really good response to Enbrel for a number of years (and so to Science Lesson 2).  The reason that it became less effective is because my body gradually started to produce antibodies against it, which is why a person usually takes Methotrexate alongside Enbrel and other anti-tnf – to stop the antibodies forming rather than to treat the disease.

I was on Cyclosporin alongside Enbrel, which is another immunosuppressant drug, but perhaps it didn’t do an adequate job preventing antibody production; then again, it did a good job keeping things at bay. He suggests trying one of the other anti-tnfs alongside Methotrexate, although he also mentioned another drug similar to Cyclosporin, called Tacrilomus, which I’ve only heard a bit about. This is the only oral DMARD that I haven’t tried and that isn’t a nice thought.

Anyway, after speaking with the registrar and a bit more waiting, it was eventually time to be hooked up to the Tocilizumab. Things went through fine for the first half an hour and I was happily chatting away to one of the nurses when I suddenly came over all lightheaded, hot and turned a fetching shade of red. The nurse went to fetch another nurse that looks after me and they took my obs again – BP was lower, temp higher and pulse rate 148 but within 10 minutes I started to feel better and the results returned to normal.

We went ahead with the whole infusion, which took an hour in total, and then I stayed for an hour afterwards to make sure I was okay. I’m still not sure what caused such a reaction but I did have a bit of a ‘moment’ during my first Orencia infusion, only not quite as dramatic. My heart rate was already up a bit when I arrived today (125) and I haven’t been feeling too good all week, but there have been no signs of infection in my wound or anywhere else.  Still, maybe there was something underlying that contributed to it and it’ll be a one off.

Unlike with Orencia, I am going straight into having Tocilizumab every four weeks and my next appointment is November 10th. The literature says that some people feel a benefit after only two weeks, so here’s hoping!


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Since my google alert for “still’s disease” hasn’t been throwing much my way, I thought I’d widen the criteria to include Systemic Juvenile RA to see if that was more productive, since there is a crossover between the two.  This is all a learning curve for techno-shy me, but it proved to be a good move as I think this article is pretty interesting:

Monitoring Serum IL-18 Levels is Useful for Treatment of a Patient with Systemic Juvenile Idiopathic Arthritis (sJIA) Complicated by Macrophage Activation Syndrome.

Macrophage Activation Syndrome  is a complication of Still’s Disease – something I never knew until reading this.

IL-18 is expressed in activated macrophages, so it makes sense that monitoring levels is useful.  However, it states that it is also useful in monitoring the activity of disease itself and I wonder if it could be the basis of an IL receptor like Anakinra or Tocilizumab in the future. (I’m not a scientist so these are just my idle ponderings).

Lastly, I noticed that the patient was treated with Cyclosporin – a drug that gave me relief for many years but that doesn’t seem to be prescribed very often; I wonder why?

Maybe we’ll see more on the article front from now on…


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I was advised to stop my Enbrel (Etanercept) injections two weeks before I am due to start the Orencia so that it has time to get out of my system and that just happens to be today, already.  I have been on Enbrel for nearly seven years now and it was a wonder drug for me for many of those years; even when things did start to slide and we briefly switched to Anakinra, it became obvious that it had been doing something to help my symptoms since I became much worse during the time off it.

Of course I have known this day was coming for a while and I am happy that we are taking the right steps forward in my treatment but still, I am filled with a bit of apprehension and sadness; it feels like saying goodbye to an old friend.  I guess it doesn’t help that they are eventually going to take away the Cyclosporin too in favour of Methotrexate.  Up until now it has been a case of changing one or the other to something different, in order to find some improvement, but for the first time in nine years I will be without either.

But we have to take risks sometimes and the switch to Orencia and Mtx could mean a new lease of life once again, instead of the monotonous halflife I have been living recently.


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I had a nice surprise today when my ‘Bridezilla’ friend dropped by to see how I was on her way back down to London.  It was nice to see her and talk about her wedding next month as it gave me chance to focus on the things I’m excited about rather than worrying I won’t be able to enjoy it.  I was hoping to get two Orencia infusions in before the actual day but that is looking less likely as time goes on, perhaps even one will bring me some improvement though… I’ve got to stay positive.

The other good thing about seeing this particular friend is that she is involved in medical research, although her current field is Osteoarthritis rather than Rheumatoid (I’ll sway her eventually I’m sure).  Still, she is able to get me information that I can’t access myself and has promised to look into any studies with Orencia and Still’s Disease.  All the information I have at the moment relates to its effectiveness in treating Rheumatoid Arthritis, which seemed pretty promising with 73% of people showing signs of benefiting from the drug.  Of course, as my rheumy pointed out (dashing my enthusiasm slightly), us Still’s patients are a slightly different kettle of fish so these figures do not directly apply to us.

I felt a bit silly for getting carrying away and forgetting this important factor but he reassured me that he was still very optimistic about Orencia for me, as its mechanism is similar to the Cyclosporin that was a successful part of my treatment for almost nine years and also the Ig therapy I had in my teens, although I’m not sure just how effective that was.  He also said that usually you can see some improvement after the second infusion or within the first month, so there’s still hope that I could feel better for the wedding yet.  Here’s hoping.


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